A Journey of Living with Cerebral Palsy

Writing Process

*This post was originally written in my journal, which will make more sense as you read, but I wanted to share it here too.*

The amount of unfinished journals I have lying in the crooks and crannies throughout my apartment is too numerous to count. Due to my love of writing, every year as a kid for Christmas or my birthday, I’d inevitably be given a journal from a family member or friend. I’d write in it for a day or two, and after a week went by, the journal got lost among the many books I wanted to read, never to be seen again.

Over time, as technology has evolved, so did the method of my writing. Gone were the days of pen and paper and in came the days of online journals and blogging. The fact that I can’t remember when I last wrote in a journal (except for now, obviously) is sad. Yet, here we are.

Over the past few months, I’ve been pretty stressed. But when you consider that I’ve been busy with wedding planning, starting a new job in October of last year, and the daily struggle of not only surviving, but thriving, the stress is understandable. Self-care needs to be a priority right now. I’ve told myself that and my therapist has told me that, but it doesn’t always stick.

I work in the helping profession, and in my case, “I love helping others” translates to “I help others long before I help myself.” However, I also know, thanks to my advanced education in counseling and social work, that in order to be of use to the people I’m helping, I have to make myself a priority. Easier said than done, right?

But, that’s where journaling comes in. A few days ago, I was mulling over my typical go-to self-care activities like taking a bath and listening to music, only to realize that those activities don’t get me out of my head enough to allow me to calm down, which I need these days. Then my therapist mentioned journaling, and I said, “But I only feel like I can write a blog post when I have something to say.” Then my therapist said, “What about writing in a journal that no one but you will read?” As crazy as it sounds, that hadn’t really crossed my mind.

For the past 7 years, blogging has been my go-to in terms of writing, which has been great. Along the way, I’ve become part of a wonderful community of fellow writers that I love. However, there is something to be said for writing with a pen and paper vs. typing. Honestly, I think part of it is because I’m at a computer most of the day at my job, so when I finally get home at the end of the day, sitting in front of the computer is the last thing I want to do, even if it is to write. The other part though is the environment. On my computer, there’s email, Facebook, YouTube, Pandora, and all sorts of other distractions. But with a pen and paper, it’s just me, my thoughts and a blank page. It’s quiet, serene. As I sit here writing longhand I am very mindful of the peace I feel internally. I’m not distracted, I’m not worried about what anyone will think or say…because the only person these words will benefit in this exact moment is me. For the first time in months, I feel at peace. I feel a sense of calm I haven’t felt in a long time.

And that, my friends, is what it’s all about. Getting back to writing because of the way it makes me FEEL…authentic, free, and the truest version of myself I’ve ever known. Not writing because of what other people want to read, but because it’s what I need in order to be the best version of myself that I can be. And if I have the option to be that person, shouldn’t I take it?

As much as I put on a “brave face” and strive to have a positive attitude on days when my CP has me doubled over in pain, there is a lot of internal frustration that comes with living with a disability. Typically, my blog has been a place to vent those frustrations. But I’d be wrong if those difficult days were the only memorable ones. Does my disability frustrate me? Absolutely. Are there days where I wish I wasn’t in constant pain? You bet. But at the end of the day, I wouldn’t trade my disability for anything. I really wouldn’t. It’s given me a perspective on life and allowed me to cross paths with some of the most special people I’ve ever known, and without my disability, I don’t know if my life would have unfolded in the same way. A blessing in disguise, I guess.

Typically, “good” days aren’t memorable. They are simply a small break, even if only for a few minutes, of the physical and emotional pain I feel as a result of being a member of the largest minority in the world. However, a few weeks ago, I had a “good day,” in a sense, and it’s one I’ll never forget.

I was going to Subway to get lunch and looking forward to having an entire hour to myself (yay introversion!). I took my walker inside, as it is my preferred method of mobility these days when I’m by myself because it prevents falls. However, when I got to the door, I realized my conundrum. I couldn’t get the door open and maintain my balance at the same time. However, thankfully, as I was attempting to open the door, someone inside saw my struggle and came to assist (thank you, kind human). I said thank you profusely, and when the gentleman just smiled broadly and nodded, I realized just how much people long to help others. Typically, it’s difficult for me to accept help as I feel like a burden, but I have to realize that typically people don’t offer to help unless they are genuine and truly do want to assist you in some way. That realization really came to fruition once I was done with my lunch, but I’m getting ahead of myself.

I stood in line to put in my lunch order, which for the first time wasn’t a big deal because my walker has an attached seat so I can sit whenever I need (best invention ever!). Anyway, I enjoyed my solo lunch, counting myself lucky to have received so much positive support from others during this difficult transition regarding my mobility. I then got up to leave, pondering in my head how I was going to exit Subway without possibly falling over or calling even more attention to myself. It was in this moment that I knew the best course of action was asking for help, so when I eyed a group of EMTs eating lunch, I asked for assistance. One guy was so excited to help he practically bounced out of his seat mid-bite to assist me, replying “Of course!” with the most genuine smile I’ve ever seen. I thought I was going to fall over (ha!) from happiness.

I thanked him over and over for his generosity, happy to know there were still kind people in the world, but that wasn’t even the best part. A few minutes later, I got to my car, opened the truck, and went to place my walker in the back like I’ve done hundreds of times without incident. However, this time I lost my balance, and because my hand was still on my walker as I was falling, my walker fell on top of me. Don’t worry, I’m fine. But it sucked. I felt embarrassed (as usual) and just aggravated at my body for not cooperating.

After a sigh of relief and a reminder to myself that the choice is to either remain on the ground or get back up, I rose to my feet. Once I was standing and started to close the truck of my car, I looked up to see the EMT from before sprinting out of the Subway. In my head, it felt like watching Baywatch, standing in awe as an attractive, shirtless man ran towards you to save the day (but he was only shirtless in my head, haha). He came up to me and said, “From the way you got up, I can tell this happens often, but is there anything I could do to help?” As much as I wanted to say no, the kindness in his eyes made me want to hug him. I didn’t hug him (which was the wrong choice because he was attractive, muscular, and looked like he could throw me over his shoulder with just a finger). However, I did take him up on his offer to help. I said, “You know what would be really great? If you could walk me to the front door of my car and help me get in safely.” The “of course” couldn’t come out of his mouth fast enough. Once seated safely, I looked up at him and said “To be totally honest, it is really hard for me to ask for help, but I’m so glad I did today.” He nodded, double-checked to make sure I was okay, and softly closed my car door.

I waited until he was back inside to cry the happy tears I couldn’t hold back anymore.

Though this is not my first blog, this is the first blog in which I plan to focus solely on discussing my experiences of living with Cerebral Palsy and the process of getting these experiences eventually published. Specifically, my goal is to raise awareness for Cerebral Palsy and other disabilities and allow others to gain a deeper understanding of what it’s like to live with a physical disability.

To kick off this blog and a new chapter of sharing my story of living with CP with others, here is rough draft of the talk I have been giving to elementary and middle schools in Buncombe County since November 2013:

I was born with Cerebral Palsy, a disability that affects my nerves and my muscles, causing me to walk differently than most people. I’ve had multiple intense surgeries and 15 years of physical therapy. My Cerebral Palsy affects the way I walk because my muscles are really tight and because I don’t have very good balance. Because of being physically different, I was always an outcast in school. I had trouble making friends, and it was hard not having someone who knew what I struggled with on a daily basis. When I walk, it is very evident that I am different, and because of my visible differences, I was an easy target for bullying in school.

I had my first bullying experience when I was in kindergarten. At that age, I had to use canes to help me walk. Because of having to use canes, I wasn’t able to walk very quickly, and there was a girl named Ashley who enjoyed picking on me because she knew I wouldn’t be able to run away from her. Every day on the playground during recess, Ashley came up behind me and pulled my hair. It wasn’t a friendly pull either. She grabbed a fistful of my hair and yanked as hard as she could, laughing as I screamed in pain. She pulled so hard that I couldn’t even try to get away from her. Every day, I came home crying, and every morning, I woke up dreading having to go to school and see Ashley on the playground. I felt like crying when I realized I was completely alone and there was no one willing to stick up for me. One day, my teacher, Miss Sandy, came up to me and told me to hit Ashley with one of my canes to help her realize that what she was doing was hurting me. See, Ashley was mentally disabled, so she didn’t know any better, and hitting her was one of the only ways Miss Sandy knew to make her stop. I never did hit Ashley though. I couldn’t do it. Hitting her would make me just like her: someone who wanted to hurt someone else. I don’t think Miss Sandy really wanted me to hit Ashley though. She was just trying to teach me the importance of standing up for myself. In many ways, it felt impossible. How was I supposed to stand up for myself when it felt like I didn’t have a friend who would stand up for me?

I’ve struggled with forming friendships my entire life. As a kid, I wanted friends more than anything. That’s why I never told a teacher that kids were making fun of me. I became afraid that once I told a teacher, the people who picked on me would call me a “tattle-tale” and the other kids would distance themselves even more. Because I was so physically different from the other kids in my class, all I wanted was to feel like I fit in. In my early friendships, many of the people who became friends with me were my friends out of pity. Even though they didn’t specifically tell me so, I could tell it was true. I could tell by the way they looked at me that they felt sorry for me. When I was young, I kept those friendships anyway because all I wanted was a place where I felt like I belonged. However, many of those friendships didn’t last long because most of the people who had been spending time with me left when they got tired of pretending to be my friend.

It wasn’t until I became friends with a boy named Tommy in first grade that things began to change. Tommy was the first person to visibly stick up for me. He confronted the people who picked on me, telling them it wasn’t okay to pick on someone who couldn’t help that she was different. Tommy’s friends laughed at him for sticking up for me, but he didn’t care. He stuck up for me anyway and was there for me no matter what. Tommy also saw the numerous people who became friends with me because they felt sorry for me. He knew how much that hurt me. Even though Tommy wasn’t disabled, he saw how I cried day after day when another person I thought was my friend just got tired of trying. Tommy’s presence in my life didn’t stop other kids from picking on me, but I began to feel a little less alone. Even now, I don’t have many friends. However, the few friends I do have are incredibly close to me, and I am happy to say that one of those friends is still Tommy.

When I was in fifth grade, I took a required PE class. In my PE class, dodge ball was typically the game of choice. Every week in PE, I was chosen last for dodge ball. I even remember one particular day when one of my friends, Allison, was the team caption. This made me excited because I thought: Yes, finally! I won’t be picked last! Allison will choose me since we’re friends. Each team captain began to choose players, and I waited with excitement for Allison to say my name. I looked towards her with a smile on my face, but my smile faded as I realized she was picking everyone else but me. Finally, it came down to Miranda, a girl who had just broken her leg, and me. It was Allison’s turn to pick, and I started to inch towards her. And then you know what happened? She chose Miranda over me! Miranda, the girl no one liked because she was so mean, and the girl who couldn’t even move as well as me because she had broken her leg. I couldn’t believe it!

I was incredibly sad from being picked last for dodge ball, but you know what? That wasn’t even the worst part. The worst part was seeing a girl named Rachel holding a dodge ball in her hands, a small smile on her face when she saw me, already eager to pelt me in the face with the ball. When the dodge ball game started, I hung towards the back. Despite dreading having to play this game every week, I knew a few tricks. I knew staying along the back wall was the best way to not get out immediately, and I knew I’d be one of the last players remaining on my team primarily for this reason. Therefore, the goal was to simply wait for the rest of my teammates to get out. You would assume the waiting part was easy, but it wasn’t. It was just more time I spent wondering how hard I’d get pelted with a dodge ball. Once none of my other teammates remained and I was the only player left, I allowed myself to look over at the other team. By that point, the other team consisted of six players, and they each held a dodge ball. Six against one, and I didn’t even have my own dodge ball for defense. The players on the other team looked back and forth at each other, trying to decide who would have the pleasure of getting me out. Honestly though, I don’t know why they took time trying to decide. They all knew Rachel had to be the one to do it. Eventually, I looked over at Rachel, staring at her just as hard as she was staring at me. Right before she threw the ball, I saw her chuckle quietly to herself. A few moments later, the dodge ball hit me right in the face. The ball hit me so hard that I lost my balance, falling onto the hard surface of my school’s basketball court. Initially, I could hardly breathe, much less get up off the floor. My PE coach came over immediately to help me up and to scold Rachel for what she had done. However, I doubt Rachel ever got the scolding she deserved because I continued to get pelted with Rachel’s dodge balls throughout my entire fifth grade year.

As I got older, I thought the bullying would stop, but it didn’t. The summer after my sophomore year in high school, I attended a creative arts camp. One day I was walking back from a creative writing class, and out of the corner of my eye, I saw a girl named Lauren imitating the way I was walking. I turned to her and said, “Hey, what are you doing?” “Imitating the way you’re walking,” Lauren said. When I asked her why, she explained that she was supposed to observe and imitate people as an assignment for her theatre class. Even though I told her she hurt my feelings, Lauren didn’t listen. As I walked away, I watched as she laughed and continued to imitate me. I ran back to my room and cried, so sad and frustrated that I was still getting picked on. Even at an older age, getting picked on hurt just as much, if not more. Lauren knew what she had been doing. She saw how I cried in front of her, and yet she still continued to imitate me and laugh at me. I couldn’t understand why she would be so mean on purpose. I ended up telling a staff member about what happened, and she contacted the teacher to find out that the imitation was never a class assignment. The next day, though, something good happened. Lauren did the one thing I never thought she would ever do: she said she was sorry.

Being bullied, either physically or emotionally, is hurtful for anyone, but it’s especially hurtful if someone bullies you for something you have no control over, like a physical disability. My bullying experiences have affected me my entire life. I still remember the details of every bullying experience I’ve ever had. I still remember how alone and broken the experiences made me feel, and how it seemed like the bullying would never stop. Typically, kids in school try to be different because they don’t want to blend in with the crowd. For those kids, it’s important to stand out. In my case, I have always been incredibly different, and all I have ever wanted was to be normal and blend in. However, differences have never stopped me from trying to be as independent as possible. I have Cerebral Palsy, but I am a survivor.

**If you are interested in having me come speak at your school, please have the school counselor at your school contact me via email at: accoonrod[at]gmail[dot]com**

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